momaine

I know someone whose dd suffered for 12 years with this and with proper antibiotics she's doing very well now. It's not too late but there isn't a test to prove she has it, that I know of. (someone can tell you more about the Cunningham tests) It's sort of a set of symptoms that makes it likely or not. Some kids respond positively with Advil which reduces inflamation of the basal ganglia. Sometimes doctors will do a steroid burst and if they respond, it is more likely PANDAS. If it is PANDAS many kids do well on antibiotics. (only certain ones though) Keep reading this site. Lots of info to glean. I'm in the middle of this myself. good luck. Angela

Dd was a week on 1000mg of regular Augmentin then we upped it to 2000mg augmentin xr. its been 3 weeks on the higher dose. she's had PANDAS for 3 years though, but she had a couple really long spells in the middle where things were mostly controlled. This fall is the worst exacerbation ever and it was just a month ago that i figured out it was pandas. This is the first antibiotic she's ever been on in her whole life. She is 13. We started Advil a few days before Augmentin and she drastically improved right away on the Advil. Then we added Augmentin and I did not see more improvement other than what I saw from the Advil until 10 days into the 2000mg dose when she stopped her tics completely for 10 days. Now they are back yesterday and today. Her ocd is horrible yesterday and today. =( I called Dr. Trifiletti's office today and left a message. I plan to take her as soon as possible. The antibiotics that she is on now were prescribed by our family physician. I need an expert on board. 6 hour drive. will be worth the peace of mind. Angela

Can you elaborate on what this ingredient is? Angela

Thank you Vickie, Every story like this is helpful to me. This is the worst day we've had in a month. Even the day she got the H1N1 Vaccine was not this bad for this amount of time straight. I gave her an extra Advil but it still hasn't helped. Sigh... Angela

I'm using the adult version, once a day between antibiotic doses. Dd is 13 years and 93lbs. Angela What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy. Angela Angela - We are also using the Culturell. Are you using the dosage for Kids that are in powder packets? Are you using it once a day?

Hi Worried Dad, Thanks for responding. We've been dealing with some of the ups and downs which I did expect, but with this particular symptom having been GONE for ten days, it made me really worry to see it resurface. I'll hang in there and see what happens. I hate this freaking disorder! Makes me want to scream. My poor girl is having such a crappy day. grrrrrrrrrrrrrrrrrr. Angela

What do you mean, they have strep in them? We use Culturelle. It is what the doctor recommended in the book Saving Sammy. Angela

Thank you very much for responding Allison. Dd is on a probiotic as well as 8000mg vitamin D3, Omega 3's, Advil (which reduces her symptoms a TON), and 40mg Celexa, as well as a regular multivitamin. I'll try to hold off panicking just yet. =) Wish this road were a little easier. Happy Holidays! Angela

Hi, Anyone have any experiece with a tic going away for a period of time and then returning? Dd was ten day with no tics from about the tenth day on 2000mg of Augmentin xr to about the 20th day. The last few days have been more difficult than the couple weeks previous. Saturday she started her period so I blamed the difficulties on that....but today, the 5th day of her period I'd be expecting her to be returning to her "norm." But instead, she's really struggling today and she was ticking while trying to dress today. I am wondering if that just happens some days while healing from this or if it is indeed a real set back and I should consider another antibiotic at this point. She'll have been on the 2000mg Augmentin XR for 3 weeks tomorrow. Angela

Hi Allison, Thanks for posting in order to give us some hope. I have a question for you....My dd is 13 years old and she started 2000mg Augmentin XR 3 weeks ago (tomorrow will be 3 weeks) She improved for the most part during that time. (improved mood, less tactile defensive, less reassurance questions) Her issues are mostly ocd but this fall she started with a vocal tic that shows up when she is under stress with ocd issues. It is a soft vocal tic. On about day ten of that dose of Augmentin her tic went away and stayed away for about ten days until today. She started her period on Saturday and since that day things have gone down hill. I was attributing that to hormones as she always had worse symptoms during the first few day sof her period. But then the tic started back today. (5th day of her period) I thought that by today things would be smoothing out again. In your experience when a tic returns (even for one day) is it a sign that the antibiotics are no longer working? Thanks, Angela

My dd has only ocd symptoms for 3 years but then developed a tic this fall during a terrible exacerbation of symptoms. Angela

Dd's symptoms have always(3 years) been primarily OCD until this fall. She had a terrible exacerbation and that was when she developed two tics. One facial and one vocal. They usually only showed up at night when she was really stressed and having difficulty with the OCD, but sometimes during the day too if she was having a hard time. She's mostly a repeater. Repeats steps, doorways, words, etc. and asks a LOT of reassurance questions. She is still on Advil. The advil instantly brought her relief from a good chunk of the ocd. It made it managable. She doesn't' rage or cry much while on Advil, except occasionally, like the night before last when it was the first day of her period and she was having trouble going to sleep...and had a friend over...and felt like an idiot. Before the Advil she raged and cried daily up to 5 hours a day. When we started the Advil it did not affect her tics. She still had the tics, so the only thing I can figure is that the Augmentin xr has started to work. Honestly, It's hard to tell but that was my reasoning. Other changes I have noticed in the last week or so but have yet to give credit to the Augmentin just yet are the fact that she's less tactile defensive. I've kissed her a few times and she did not begin her normal routine of hugging and being unable to stop...and frustrated...asking me to not do that. Other subtle changes too. Angela Hello Angela, Is your DD still on Advil? so do you think all the improvement should owe to Augmentin XR? Or Advil helps some? What dose of Advil do you use? times/day? Thanks, Jack

Dd stared Augmentin at the higher Saving Sammy dose 2 weeks 3 days ago. (for one week before that shew as on half the dose) I believe it has been about 7 days since I've seen her tic. It was almost always at night when she was having a difficult time. She still has a hard night sometimes (last night was one...first day of her period) but there was no tic. Hopeful. Angela

My dd had the H1N1 about a week after she started taking Advil which reduced her symtpoms a LOT. (like 80%) That night (13 hours later) she did 3 hours of compulsions with crying and raging, unable to stop. She had not had a night like that since starting Advil. The next day was also difficult but not as bad. By the following day she was back to her normal self with Advil, which is fairly even keeled....with some (but managble) repeating walking/shuffling, doorways, reassurance questions. Angela

Thank you for posting this. Angela

This will be a fantastic resource. Another thought I had was discussing the exact doses of antibiotics that helps these kids. When I first asked our family doctor for a HIGH dose of Augmentin she put dd on 1000mg per day. Then I read Saving Sammy and asked for more and specifically the XR which is extended release with a different ratio of Ammoxicillan to Clavulonic Acid. (the regular augmentin had too much clavulonic acid if you upped the dose to 2000mg per day....based on her body weight.) And maybe how Advil can help....and other things to benefit the immune system like Vitamin D. and the benefits of Probiotics while on antibiotics. Thank you ! Angela

yes, many of these kids have rages and crying spells that they did not have before PANDAS, mine included. Sometimes ssri's don't help pandas kids and sometimes they do. My dd was on zoloft for a couple years before we knew it was pandas. It helped at first then stopped working. then she started celexa which also helped some. Then we figured out it was pandas and we started her on 2000mg augmentin xr per day two weeks ago. The dr. did not want to make more than one change at a time so she is still on celexa. Antibiotics alone allow some of these kids to heal and some need more. We've also started her on 8000mg per day vitamin D (from the d3 family) and Omega 3's. Plus probiotics between antibiotic doses. Advil reduces her symptoms a lot so we giver her 400mg of that per day. We're getting by hoping for good news. I was thinking she had been on the antibiotics longer but it has only been 2 weeks 2 days at 2000mg per day so it's still early to tell. Angela

This is fantastic! A big thank you to those of you who have given your time and energy to make this disorder known. I am still struggling with the day to day care of my dd. This is invaluable.

I started giving her 8000mg of vitamin D (for the d3 family) plus 1 Omega 3 fish oil capsule per day starting 2 days ago. I just looked up DHA (never heard of it) and it is affordable enough so I'll pick up some of that next time I'm in town. Thank you for your thoughts. It hasn't been a month yet and so I"ll try to be more patient. On the good days I am so hopeful but on those difficult days I worry. Angela

Thanks Buster. There has been some improvement but then she'll have a tough day and I'll worry that it isn't working. The improvements are small things but they all count. I kissed her cheek both yesterday and today and it did not set off a bunch of repetitions that she could not stop. (That's a sweet one, I miss kissing her and haven't been able to for 3 years) I haven't seen the tic for at least 5 days. Her mood has improved over all. She has slept upstairs (couldn't even go up the stairs a few weeks ago) of her own accord 5 times though it was difficult. Today she asked a LOT of reassurance questions. But that was one of her first symptoms and one of her worst. It hasn't been half bad lately. It used to be the first thing out of her mouth in the morning and the last thing she said before going to bed at night. I keep telling her we need to see these little improvements and focus on those rather than the difficulty she is still having. But at 13 it's hard to be patient. Besides, I'm not patient and I'm much older. I just want that smilely little funny girl back full time. Angela ~ trying to be patient

No, the vocal tic began this fall during the worst exacerbation she has had so far. I haven't seen it for at least 5 days now. Angela

by the way, i changed my user name. same Angela that has been posting recenlty.

Dd started on Augmentin XR 2000mg about 2.5 weeks ago.(and a week beofre that was on 1000mg regular augmentin) It was around that time that she started on Advil and we saw big improvements from that. It does seem thatin the last 4 or 5 days that her tic is gone. (vocal tic which only showed up under extreme duress and which was also the last symptom to show itself) In writing it, it doesn't sound like its been a long time but I was hoping things would move along a little more quickly. She has had this for 3 years though. How quickly was it before those of you who have been successful treating this were able to see your old child back? Am I hoping for too much? Angela ~ wishing her dd had NO symptoms